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Old 09-07-2008, 06:35 AM   #1
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kerrysmom95 HB User
Question Does anyone have Neurofibromatosis?



I was diagnosed several years ago by none other than my OB/GYN.. I have never had further testing until I went to a new Primary Doctor. I can't get in to a specialist until December.. I believe I have NF1.. I have Birthmarks, the raised lumps.. Mostly on my body and very few on my face.. I've had several removed but it seems once they were taken off 10 more appear.. My surgeon who has since retired would not touch the 3 on my face for fear that only bring on more.. If any of you have this what did you do about it ?? I remember this one little smart mouthed boy (he was around 5) ask me what they were.. I told him that I was a terrible liar when I was his age and this is what happened because of it.. His parents had to turn their heads because they started to laugh.. After a few days they thanked me because he changed his whole attitude.. I know there is no cure for this I'm just sick of them popping up on my chest and back.. Can anyone share their stories about this?

 
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Old 10-28-2008, 07:20 PM   #2
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Travis from MN HB UserTravis from MN HB UserTravis from MN HB User
Re: Does anyone have Neurofibromatosis?

Kerrysmom, I was wishing to find a more active thread on this :/. I hope your testing goes well.

I was trying to date back the disease in the family line. My cousin was recently tested for it at a well respected hospital. His is GENETIC. Until then I had always thought my case (the only one seemingly in the family pool) was genetic mutation. NF can be either by inherited or mutation of two chromosomes. I then found out GREAT grandfather had a large amount of cafe a'laut spots, but not the tumors. Gramps, Gram, and other senior relatives showed NO indications. My aunts and uncles showed no signs. So now it SKIPPED to my generation (meaning it didn't show for 2) and I was the first one to show symptoms as a child. My cousin is the only other one in the family pool who showed surface tumors.

Of course his mom was going bonkers wanting everybody to get tested. If they didn't show indications during growth they most likely are fine. They may carry it but do not have active cases (and cannot).

My first growth that was removed was at age 4 (left thigh) that looked like a large swelling, just it wasn't going away. Following year I had a brain tumor (benign) removed down by the speech and fine motor region. Thankfully no lasting damage.

About 17 Years later I needed my left hand worked on so I could make a fist. Still a lot entangled in there, so thats on hold for more if it will be covered.

Only lasting effects from the brain tumor were seizures. Not as bad as the hour long of clusters that I first had, but every 90 days or so I can live with.

My chest has too many to count from larger than 15mm to less than 1mm. Not painful, but not worth removing. So I leave them.

--Travis

 
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Old 11-06-2009, 03:09 PM   #3
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Re: Does anyone have Neurofibromatosis?

Do you know anything about NF2? I think I may have it but I may be stretching, but I just had a meningioma removed from my brain and I read something that suggested that about 40 percent of women with these also have the neurofibromatosis. I know I don't have the NF1 but they also talked about the NF2 and something else symphomatosis something like that, it can be linked to severe nerve pain all over, tumors, tingling in hands and feet and numbness in the extremeties. I have all of this. Can you at least tell me how they test for this? Anything would be appreciated...

 
Old 11-30-2009, 05:28 PM   #4
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Travis from MN HB UserTravis from MN HB UserTravis from MN HB User
Re: Does anyone have Neurofibromatosis?

NF1 and NF2 can be genetically tested for. The two variations have genetic markers that make the inherited disease distinct when tested for. Mind you this is Genetic testing, so MOST policies will not cover the lab cost.

Don't quote me on this, but it's either the 17/ and 21 or 17/22 for NF 1/ NF 2 for the location of the gene's. I'm going from memory; not from a web page or the printed material.

I would suggest putting together a family history at least 3 generations back. MORE if you can if you think it's NF.

As you can see by my post it Skipped grandparents and my folks generation (so 2 generations) BUT the gene was carried down! It goes all the way back to Great Grandfather for the last known case in the family line that I can trace IN MY FAMILY LINE.

I also spread out to Gramps side back 3 generations, and on Grams side I even did Granny and shoe string relatives so I had a good family history. However the hospital didn't really care for more than Great Grandmother. HOWEVER if there are any medical patterns that repeat on one side or the other document as MUCH as you can (such as asthma in the men or women, or specific medical issues etc.)

For run of the mill NF information, USUALLY the symptoms first show up when the person is young (k-5 grades ages). When the body is rapidly growing. It levels out when the growth slows down, and the (growth) hormones are not as elevated.

With women who have NF, during pregnancy the symptoms and growths can spur up again. This is believed to be due to the hormonal change in the body when carrying the baby.

If you never showed any growths on your chest/stomach (small tumors) in your childhood, or darker pigmentation spots on the skin it is very unlikely, but not impossible for you to have NF. NF2 is the more severe variation of the disease. It tends to effect the optical and auditory frequently.

--Travis

 
Old 04-19-2010, 08:47 AM   #5
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reginae HB User
Re: Does anyone have Neurofibromatosis?

Quote:
Originally Posted by kerrysmom95 View Post

I was diagnosed several years ago by none other than my OB/GYN.. I have never had further testing until I went to a new Primary Doctor. I can't get in to a specialist until December.. I believe I have NF1.. I have Birthmarks, the raised lumps.. Mostly on my body and very few on my face.. I've had several removed but it seems once they were taken off 10 more appear.. My surgeon who has since retired would not touch the 3 on my face for fear that only bring on more.. If any of you have this what did you do about it ?? I remember this one little smart mouthed boy (he was around 5) ask me what they were.. I told him that I was a terrible liar when I was his age and this is what happened because of it.. His parents had to turn their heads because they started to laugh.. After a few days they thanked me because he changed his whole attitude.. I know there is no cure for this I'm just sick of them popping up on my chest and back.. Can anyone share their stories about this?
So how are things going for you now? Unfortunately you had your neuro set off by your pregnancy. That's what happened to my mother. My sister and I were diagnosed around ages 4 & 6. We are currently 35yr & 37yr old. I wish I could say it will get better but that is not the truth. Just take care of yourself. Make decisions for yourself concerning the tumors. Doctors try to discourage surgeries but only you know the level of pain you can endure. Also you have probably learned by now that the neurofibroma can also be malignant. I remember when we we young the doctors always told my parents that they couldn't be cancerous. Then in 2000 my lister had one removed from the inside of her left knee that WAS a sarcoma (cancerous neuro) and had to undergo radiation treatments. Just don't take anything lightly. There is also a research facility in Bethesdea Maryland. Its called National Institute of Health and they do several free clinical studies there. My sister and I participated in one in 2007. You will learn a lot. Mostly from other patients you meet. Our condition affects individuals so many different ways, you wouldn't believe it. Your child should be tested soon. Age 2 is a good time to start actually. Also if you decide to look up NIH, you can sign up for their news letter. Good information and they host several events throughout the year. One more thing. Go to the MTV website and clck on the show 'True Life'. They recently had one on "I have NF." You may find some info. that you need. GOOD LUCK NEW FRIEND!!! Everything is gonna be alright.

 
Old 05-11-2010, 05:12 PM   #6
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crzygrl4u HB User
Re: Does anyone have Neurofibromatosis?

hi my name is Heather Im a 31 yr old who was diagonised with neurofibromatosis when I was at the age of 2. I do understand where your coming from I've have serval removed since the age of 18 and yes its like for every one removed several more take its place.... My dad died because of this at the age of 39 caused brain cancer its scary because I may have the same chance of dying thr same way I just want to know how you cope I don't know anyone who has this and I was very suprised when I came across this post please feel free to contact me at [deleted].

Last edited by Mod-S4; 10-19-2010 at 06:37 PM. Reason: Do not post off-board contact info. Thanks.

 
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